Rare diseases

[marti]

Is MS still considered to be a "rare" disease? Seems like more and more people are being diagnosed which doesn't scream "rare" to me.

[Seasha]

Good question, Marti! I've often questioned the labeling of MS as being a rare (or orphan disease). I looked up some information and found this - Rare Disease Day 2015 - http://www.rarediseaseday.org/articl...a-rare-disease

Clearly it states that the criteria for labeling it rare in the US as affecting less than 200,000 Americans, yet the number (for years now!) states that the MS population is over 400,000.

On the other hand, from the NIH comes this - http://www.nih.gov/news/health/oct2014/ncats-08.htm - which states "There are several thousand rare diseases, of which only a few hundred have any treatments available. Combined, rare diseases affect an estimated 25 million Americans. Some obstacles to developing rare disease treatments include difficulties in diagnosis, widely dispersed patients and scientific experts, a perception of high risk, and a lack of data from natural history studies, which follow a group of people with a specific medical condition over time."

So maybe it has something to do with receiving funds and grants for research and patient assistance - Here is something else I found - http://rarediseases.org/genzyme-and-...rare-diseases/ It states "Genzyme, a Sanofi company, and the National Organization for Rare Disorders (NORD) today announced the creation of a fund to pay for standard diagnostic testing for people with mysterious, undiagnosed medical conditions. The fund will help those who have applied to the National Institutes of Health (NIH) Undiagnosed Diseases Program but who cannot afford the basic medical tests needed to make them eligible to participate in the NIH program."

NORD is the National Organization for Rare Disorders and Genzyme is, of course, the company that has developed treatments for MS.